In UK, new to this forum, had breast cancer in 2004 when I was 34, had surgery, chemo, radio, it went away.
Well it just came back - from 1st symptoms to finding it was in liver (little), lungs (little), ovaries (may be a new cancer) bones (spine, rib, shoulder, THUMB), most of lymph system and menynges (sp?) all at once in 6 weeks. Oh, and in little subcutaneous lumps all over my skull - never heard of that, nor had half the doctors. Not very fair really…
Just had first taxotere and pamidronate - side effects not very bad at all (FEC was OK for me first time round too) and will be getting 5 days radio to spine soon to try to cut down on pain. Will be told after second chemo if anything is working, if not, I don’t get Christmas. If it is, no idea really.
Quite reassuring to see posts here with long term secondaries, but noone else seems to have quite the same full monty. Anyone else in situation anywhere near similar?
Susie
So sorry to hear you have been given such a plate full!!! You don’t do it by halves do you? My situation doesnt come anywhere near but I was dx with extensive bone mets 5 years ago and did find the rads to spine a great help in easing the pain. That plus the pamidronate - though I was pretty dependent on painkillers for the first 12 weeks, after that I was able to stop taking them. I do hope the taxotere works miracles for you and that you get to enjoy Christmas. Do you have family and friends around to help?
I am sorry to hear about your recent diagnosis of secondaries. Maybe it would help to talk to someone in confidence about how you are feeling, if you think this would help please contact our free phone helpline on 0808 800 6000. The team on the helpline can offer support and a ‘listening ear’ for you to share your fears and concerns. The helpline is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
We also run a live chat session for anyone diagnosed with secondary breast cancer every Tuesday evening from 8.30pm to 9.30pm and you can share your experiences and feelings with others in a similar situation to you. You can read more about this via the ‘Support for you’ tab at the top of this page.
Hi Susie
You have been dealt a bum deal. You seem to be in good hands (where are you being treated by the way?) in that your examination appears to have been very thorough - thumbs indeed! As you may have seen from the posts, there is such a variable response to treatment that having extensive mets (or having few mets) is not an indicator of success or otherwise. I had lots of liver secondaries and one was pretty big and I am still here (secondaries in 03). We will all be rooting for you and supporting you, you sound positive and that will help you get through your treatment.
Loads of support and info to be had here - you have come to the right place. I’m keeping everything crossed (thumbs too) that taxotere is already doing its wicked worst to those mets. Keep us posted and, so sorry to have to ‘meet’ you under these circumstances. Take good care of yourself, and any questions - just ask.
Thanks for all the support - is very nice to hear from you all. I will keep logging in and will be good to get tips about treatment etc as it goes on. Up in middle of night with dodgy stomach at the moment
Being treated at the Marsden in London (I live round the corner) and I do have very supportive friends also
be in touch
Susie
(ps they didn’t tell me re the thumb, I figured that one out! 2 doctors also ignored a spontaneously breaking rib for 6 weeks which also didn’t help)
Just want to say how sorry I am to hear your news , you don’t do things by half do you??.. Good luck with Taxotere and you seem to be in very good hand.
Like Jenny said you have come to the right place
Take great care
Ps My mets are all over the side of the mastectomy , Taxotere didn’t work for me , but I then went onto carboplatin/Gem something (sorry can’t remember) mets disappeared after first treatment … hurray … but 5 weeks after stopping the chemo the spots were back, just waiting to go onto Xeloda. Seeing an onco in Harley Street
first though to see if there is something out there that I can take with Xeloda . You are already in a very good place in fact I would like to be referred to the Royal Marsden
I too find it hard to get info on skin mets , didn’t know it could spread to there all info is on spread to liver, bones, lungs + brain. Are you hormone receptive ? I’m tripple neg,
I’m new here too - just found these forums by Googling vinorelbine and saw your questions about skin mets, so thought I would register to answer. I was dx at 33, back in 1996, then had 6+ years NED before being dx metastatic at the end of 2002. I have had skin mets since then, about a dozen at last count, spread all over. They are actually quite useful! because they give a quick feel (as it were) for whether any new chemo is working, before scans etc. I have one on my back which gets measured with the calipers every time I see the oncologist. Also one in my lower lip which I have only just realised is a met (duh!) as it has shrunk quite a lot with the vinorelbine.
I also have mets in my stomach, liver, pancreas, pelvis somewhere and a few in my bones.
I used to be a Marsden patient (now live in the Highlands) - you couldn’t ask for better.
Hi Susie, hope the treatment goes well for you. I cant comment on any bit, except the brain, yours does sound interesting? not that you want to hear that!
Take care
Hi potentilla
the 2002 bit of your dx gives me hope - i just assumed what with the spread that i was basicaly immediately doomed! my onc won’t talk prognosis at all for a few weeks (scan after end of 2nd chemo), so a bit up in the air. o nice to hear that from you!
I have many tiny skin mets (thought they were insect bites for the first month), but I don’t think they are going yet… have modelled them with blutac on a head mould so I can keep track though - fun evening with a friend!
Hi Pontentilla
Just read your Post that you also have Pancreas Mets, is it Breast Cancer that has gone to the Pancreas Mets? am interested because … I was diagnosed with Breast Cancer 1998 Bone Cancer Mets 1999 Pelvis, Hip, breastbones. Have been ok up till Dec 2007 then told i now have the Mets in my Pancreas, have a stent & take Creon for food absortion… lots of problems that have now got worse, my Cancer count has increased, & looks like my next step is Chemo, due to have another CT scan tomorrow.
Am also going into my local Hospice for a few days to get my drugs sorted out… any info you could share with me please… ie how you cope with the Pancreas Mets, as i am told its quite rare.
Thanks for listening
An Old Poster
Lucy Ann
Lucy Ann - sorry not to have replied before, I have only just worked out how to keep track of replies on these forums as they don’t email you automatically like some forums do,
Yes, mine is (or maybe was) a breast cancer met. It was right at the head of the pancreas leaning on my biliary tree, which gave me jaundice, so I have a biliary stent (actually I have had 3 so far). It is apparently very difficult to “see” the pancreas on a CT scan because it is behind other organs, so they missed it at first and only found it with an ultrasound after I stopped eating and started going yellow. Since then I have have courses of both Taxol and vinorelbine, and my last scan said “pancreas normal”, so at the least it has shrunk a lot (wish the same had happened in my liver!).
The main problem I had was the anorexia; not sure how much that was the met itself and how much the jaundice, because I had the biliary stent put in and starte Taxol more or less at the same time. I did subsequently have much worse jaundice when the stent blocked, however, and the anorexia was not nearly so pronounced, so I suspect the first lot was mostly the met.
Best of luck with your chemo, and hope it is as successful against your pancreatic met as mine was.
